Filed under: Health
For those of us who muddle through with pain, protecting our bodies is a very real issue. Knowing your limitations, knowing when to say when is something that I would wager most of you don’t know how to do all that well. Let me explain.
I have been dealing with chronic pain for a very long time. Choosing my battles is something that I still struggle with. On a day-to-day basis, how do you choose what you will do and what you won’t do. I have touched on this before but not from the same perspective. How do you protect your body from harm and satisfy your head at the same time? How do you do the things you love to do and keep yourself from activities that do more harm than good?
Psychology. Pure and simple. We are rational beings. We make choices on everything we do in a given day, more or less anyhow. And in making those choices, we do most things for our own benefit. We don’t make dangerous, risky decision with regard to our bodies nor our minds. But when chronic pain is an issue, those decisions become more complex. You are now faced with challenges that not only give us a way to get things done in our lives, but to also make sure that our bodies are cared for so as to not increase our level of pain significantly.
Take for example daily living activities. These exist outside of our parameters for work and pleasure. They exist because they are things that we HAVE to do on a daily basis. Not things that we WANT to do necessarily, but because they are a must. So negotiating a deal with ourselves as to whether or not to do them is, well, non-negotiable.
But it is the fun stuff that seems to slip through the cracks when you are in pain. I used to give up many things to accommodate my level of pain. Gave up going to movies, theater, travel, shopping, etc. But then one day I realized that I was a recluse. That pain was controlling my life, not the other way around. And it was at that point that I decided that I would no longer give in the my pain. That I would take charge of it and live the fullest life possible, regardless of how much I hurt! And that was a real revelation. I found that I actually did and could do much more than I had ever thought! That being active at all cost is the way to go, keeping my body in some semblance of good condition. And the more I did the better I felt, up to a point anyhow. My problem was that I was not very good at choosing my battles. I would do EVERYTHING and then live with the fallout! And in more recent times, I have found that I do the things that are really important, then see what’s left over. If I have more energy, more drive, then I look to doing more extracurricular activities.
And I also realized that I could be active, could have fun, and still protect my body, more or less. There is no way to totally anticipate how much pain a given day will bring, but it is possible to give it all a go and feel human. And I figure that my body is going to be where it’s going to be and I will have to deal with it.
So the bottom line is: Enjoy life. Do things you love while you can. Have fun, travel, pursue whatever you are passionate about and tomorrow will take care of itself. And your pain will likely still be there, but you will be in a better place for having lived!!
There is much scientific data on how the body processes pain impulses. I am not here for a discussion of the Anatomy and Physiology of pain. If you deal with chronic pain, you have more than likely had the lecture on how it all works. Gate theory, etc.
What I am referring to is HOW we perceive pain. How we take what the body is telling us and translate that into what we know as pain, based on many factors. These include cultural, familial, personal, psychological, and visceral interpretations of pain. We learn early on that how to deal with pain. Watch a small child skin his knee, take a tumble, and you hear the blood-curdling sound only a child can make. How a parent deals with these early injuries shapes the child’s image of pain and how he deals with it. Most parents coddle a child who has been injured, who wouldn’t? It is about caring and nurturing. Making him feel safe and calming his fears as only a parent can do. But what if we overreact? What if we become hysterical? What kind of image does that send to the child? And next time he is hurt, does our reaction shape how he deals with pain?
In some families, pain as treated as a badge of courage. “Keep a stiff upper lip”. Ever hear that growing up?? Don’t cry, big boys/girls don’t cry! Oh, don’t be such a baby! What kind of message are we sending to our children when we use these terms?? How are we shaping their future ability to deal with and verbalize pain? Much of how we learn to perceive pain comes from watching the behaviors of those around us as we are growing up. I mentioned before that my father was an extreme stoic. Well, funny thing, how do you think I learned to deal with and express my perception of pain? These learned behaviors go way beyond the scope of just pain perception. Think about how we deal with relationships, conflict, stress, most anything in life. And our parents are the first one’s to shape these behaviors.
I have spent much time in hospitals in my life, both as a patient and as a health care provider. Much of this was spent in the E.R. Watching the response of people to various injuries is something that I didn’t really pay much attention to. But slowly, I noticed that the perception of pain was not always proportional to the extent of the injury, so there had to be one or more of the factors mentioned above at work. I would see people with relatively minor injuries coming unglued! Other times, people who should be, were not. And this is taking into account things like shock.
One thing that anyone who has been admitted through or a patient in a hospital E.R. knows is this: The squeaky wheel gets the most grease! If you are in pain and suffer in silence, it will be 5 hours before anyone looks at you. If you are hooting and hollering and letting everyone who is within earshot know about it, bingo, you get attention. Case in point: One night several years ago, after spending a number of hours at home vomiting, doubled-over with abdominal pain, I decided it was time to visit the E.R. It was in the early hours of a new day. I was pretty sure that I had a bowel obstruction. There was a N.Y. blizzard going on outside. From where we lived it was about 13 miles to the hospital. It took well over an hour to get there based on conditions. When we arrived, the place was a zoo. I walked into the intake area and began to fill out paperwork and talk to the triage nurse, explaining why I was there. She explained that it was a very busy night and that it might be a while before anyone could see me. About this time, a wave of nausea came over me, so I grabbed the closest trash can and proceeded to puke my toes up!! Funny thing, they took me right in. And I did, have a bowel obstruction, that is.
I noticed in one of the comments tonight a list of “pat responses” to the proverbial question: “how do you feel?” I have used any an all of those at one time or the other in my history, most many times. But I started thinking about why we choose a particular response on a given day, even though we may feel no better or worse than we did yesterday, or for that matter for the past month! Is it in the perception of pain or in the processing of it that we come up with our response? Or is it purely psychological? Is our response tempered by our ability to cope on any given day? Do we feel “fine” today because we don’t want to admit that we are dying but can’t talk about it at that moment? Or do we say we “feel like crap” because mentally it is healthier at that point in time than denying that we hurt?
I personally think it is a combination of factors. Again, there is no scientific basis for my opinion, at least none that I have researched. It is purely my opinion, based on my own experience. But I do know that chronic pain patients may have relatively stable levels of pain on a day to day basis, but their response varies greatly with what else is happening in their life. Stress plays a big part in pain perception. When you are emotionally or physically stressed, the level of pain perceived is greater. I know this from experience. When you are happy and content, even though physically nothing is different, you just feel better. Think about how you feel during and immediately after sex if you don’t believe me. How many of you can say that you have significant degrees of pain during sex? Not that pain can’t cause issues with sexual performance, it certainly can. But all things being equal, sex is a great equalizer when it come to pain control.
So, many questions, few answers. I would very much like for any and all of you to put in your opinion on what I have written. I know that there are those of you who have pondered this and written about it. Thanks in advance.
Filed under: Health
It seems as though I have touched a nerve with the previous post, therefore I plan to go on a bit:
First of all, thank you “Surfer Jay” for your comments. You brought up a couple of points that I neglected to touch upon. You are so right when you say that being honest is the key to any relationship. And being honest about our physical state is something that we as humans, and I think as Americans, find very hard to do. And I will go out on a limb here and say that it is more of a male issue than otherwise. We are supposed to be the strong ones, the providers, the protectors, the ones who are without fail. Our fathers and their fathers and so on were all of that and more. It was a generational issue that the man was the one who worked whether he was sick or hurt to provide for his family. And he didn’t complain, never admitted that he was less than 100%! There is a term for that, one I don’t hear so much anymore, but if you look in the dictionary and find the word “stoic” you will see a picture of my father.
Merriam Webster offers this:
————————————————————————————–
- Main Entry:
- 1sto·ic
- Pronunciation:
- \ˈstō-ik\
- Function:
- noun
- Etymology:
- Middle English, from Latin stoicus, from Greek stōïkos, literally, of the portico, from Stoa (Poikilē) the Painted Portico, portico at Athens where Zeno taught
- Date:
- 14th century
The other factor that came into play was that although at the time I quit working, my salary was greater than my wife’s, that was about to change in a huge way. Her career was blossoming and growing and in short order her earning capacity surpassed mine exponentially.
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I wrote a rather lengthy passage on this topic the other night but I guess I neglected to save or publish it so here goes again.
I was reminded recently that when you are a chronic pain sufferer, there are basically two ways of approaching your own pain and the pain you observe in those around you. This is my own opinion based on personal observation so if you have other ideas on the subject I would love to hear them.
The first type of person is one who uses their own experience as sort of a barometer when those around them are in pain. Allowing for a level of empathy that likely doesn’t exist in someone who has never experienced chronic pain. This type of person rarely exhibits those pesky pain behaviors that make us crazy when we see them in others. Cringing, crying out, moaning, etc. All things that if you have passed through a multidisciplinary pain management program you know are unacceptable. They only add to your level of frustration and that of the people around you.
The second type of person is the one who lives at the level described above. Who is in pain and everyone in the world knows it. And the behaviors are exacerbated by the more people around. I observed a family member recently who was largely silent except when others were around and who at that point became very vocal, moaning, crying out with every minute movement. I brought it to their attention, maybe a bit indelicately, but it was distracting as shit!! The attention-seeking behavior in this type of person is so counter-productive. It forces the pain sufferer to focus on their plight and everyone around them to do the same.
There is no one way to cope with pain, chronic or otherwise. We each have our own mechanisms for coping, but one thing I have come to realize, and was recently reinforced to me, is that it is not productive to dwell on the negative aspects of our lives. Looking to the brighter side of life is a way of negating some of the ill effects of all that is negative in our lives. The more we talk about and dwell on those negative aspects, the easier it is to become depressed and miserable. Maintain a positive outlook and a sense of humor at all cost. It will carry you through the dark times and sustain you through the better times.
Focusing on the negative is a dangerous thing to do for a chronic pain sufferer. Depression, as everyone who has ever dealt with any of this knows, is a constant companion of anyone who suffers chronic pain. It is largely unavoidable in reality. And for those who dwell on the negative aspects in their lives, depression becomes even more intense. I have walked down that path myself, and antidepressants help to a point, but I believe that much of your attitude can be controlled from within.
Counseling is very important. Having someone who is not part of the inner circle to share these feelings with is very important. But so is having someone who can empathize with them. Family members who have never experienced chronic pain can sometimes not be the best resources. And how to best verbalize how you feel without resorting to the stereotypical pain behaviors is something a counselor or pain management program can provide.
I do think it is important to be honest about how you feel with spouses/life-partners. We often develop a pattern where we use my favorite term, “I’m Fine” in reply to the inevitable question: “how are you?”. And sometimes it is the only answer you can give without going to a place where you don’t want to be right then. But when it becomes a pat answer, one that truly says nothing about how you feel, then your partner begins to not only question your sincerity, but also to resent being left “out of the loop” when it comes to how you are feeling.
It can become a vicious cycle of denial for you and one of deepening resentment for your loved ones. Finding the balance that allows you to be real and at the same time keeps you from dwelling on the negative, and sharing your true physical and emotional state, that’s the real trick!
I guess the bottom line for me has become: Be real, don’t deny your pain. It is what it is. Embrace it, deal with it, and move on. Most of all be real. Don’t try to be superhuman. Trust me, you aren’t!! Neither am I. And there are days when you feel like getting out of bed is the herculean task for the day. So be it! The other point I wish to make is this: Don’t fail to recognize what’s going on in those around you. Being so self-absorbed can result in those closest to us feeling uncared for. They have their own issues, own pain and we have to be open to it. If you live in a world of self-pity, then you may very well miss the chance to be there for someone else.
Filed under: Uncategorized
I was thinking tonight that the reason I started this blog was two-fold. First, I wanted to share my experiences with chronic pain and with life, with anyone who might benefit from reading this. For someone to see that they are not alone, their experience is not all that unique, and there are those of us who really do care about what happens to them.
Secondly, I wanted to share my journey, my experiences with my family and friends, some of which have been with me every step of the way, but still don’t really know or understand all that has transpired, particularly the things deeply rooted inside me.
But then it occurred to me that maybe this had become something more. Just what I am struggling to identify but have mostly been thinking that as it develops, it is becoming the story of my life, which goes back to my second point, except that I never really intended to get into some of the areas in which I have digressed to. And instead of something that chronicles a certain chapter in my life, this has become more and more all the time a history of my life. Even though it is far from orderly, far from chronological, it is taking on a quality that will hopefully help those closest to me, and particularly my boys, know me and know where I came from and in the end what kind of person I am and also what kind of life I have lived.
I was reminded recently how very important it is to glean as much information from our aging relatives as we can, while we can. My father who will be 86 next month is a great story-teller. And in talking to him I have learned much about where him and the rest of my family have come from, the experiences they shared, what we all have in common and how we are all very different. And I have been reminded that my window of opportunity to chronicle these moments becomes more and more precious with each passing day. He is the last of his generation. No siblings remain. The cousins who do remain don’t really know him or any of us for that matter. We have been sort of a family divided in may ways. Loyalties to one brother or the other came out of an incident that most of us younger generation knew nothing of, only the fallout that subsequently pulled family members one way or the other.
So what does any or all of this have to do with my blog, with chronic pain? Well, like any of the stories that make up a life, a family history, whatever, chronic pain is so tightly woven into the fabric of who I am and where I have been, that it can’t be overlooked. And it is part of my story, one that I need to share. And if only one other person ever reads any of this, I feel like my efforts have not been in vain. And one day, future generations of my family can look back on this, on the stories, on the experience, and maybe understand a bit more about who I was.
I was reminded recently why it is so important to write things down. I was having a discussion with my brother on the origins of the Old Testament. How the oral traditions of the ancients were finally transcribed into what we consider today to be the Old Testament. But that how for a very long time, the stories were passed down by repeating them to future generations. It made me think about how very important it is for us to leave something concrete for our future generations. That no matter how wonderful it is to hear the stories related by an older adult, parent, grandparent, it is just as important or more so to write it down. To make it available for everyone who cares to listen.
So it is my hope that in time, I will be able to clean this up, put it in a better, more orderly fashion, and have something for them to hold onto for many years to come.
Filed under: Uncategorized
Today was one of those days when I wish I hadn’t gotten out of bed. Having muddled through the past couple of weeks with varying degrees of GI distress, I have been feeling pretty frisky the past few days. Things have settled down to the point where my diet was beginning to approach something more normal. That is until today. For lunch we stopped at a mom-and-pop Greek place and I ate a pita stuffed with Falafel, some yogurt, a bit of tomato and lettuce. By the time I got home I felt as though I had been kicked in the gut by a mule!!! I was nauseated, sweaty, and very uncomfortable. After several hours of feeling sick the sensation began to subside a bit, but not totally. Was it what I ate? Was it a poor choice based on what I have experienced recently? I am not sure. But sometimes, regardless of how I feel, the urge to eat something other than gruel is overwhelming. I have subsisted on Boost, carbs, yogurt, and some soft cereals for nearly 3 weeks, which normally puts things to rest rather nicely. I have avoided the antispasmodics for the most part because they have such a huge drying effect on the oral mucosa! I hate that feeling and would rather be a bit crampy rather than have terminal cottonmouth!!
Here again I look back to the days when I had this sort of cast-iron gut. My favorite food on earth was the Jalapeno Poppers at a place in KC called “Thirsty’s Cantina. OMG they were delicious, and I have never found any better, bar none! They were stuffed with a blend of cheeses, shredded chicken and spices. They were then dredged in flour and deep fried. One night I went with my brother who is the king of spicy foods. We each ordered poppers, 6 to an order. Well, I ate mine, and half of his! Oh did I pay for it the next day!! Can you say “flame-on”? But so delicious!! Today eating one of those would probably kill me!! But I guess as they say, it could always be worse! I could be sucking down TPN as an alternative to food! Not a fun place to be. And dragging around a G-Tube and collection bag was not much fun either! I don’t know if I could go through all of that again. After two rounds of relatively long term G-Tube placement, I don’t really want to go there again. But I guess we do what we have to do, right? No matter how uncomfortable, no matter how protracted, sometimes it is the only choice. Have never been one to dodge a good challenge. But some days, I would rather be a bit less challenged, if you know what I mean.
Filed under: Uncategorized
One thing I haven’t mentioned here so far is the whole problem with travel. Don’t get me wrong, I love to travel. Love seeing new places, experiencing new cultures, etc. But the issue comes in when I think about the complexities and considerations that face me when traveling. Having chronic pain is one issue. Spending long amounts of time in a car or on an airplane can exacerbate orthopedic issues. Having a fused knee adds another layer to the whole problem. Finding seating that is comfortable in restaurants, on buses, trains, planes, cars. Most of which don’t afford enough leg room based on my height. But also, most seating is wide enough that it hits me mid-thigh. This compromises circulation and in some cases, puts undue pressure on nerve roots. Try this some time. Sit in a booth in a restaurant, extend one leg or the other and lock it at the knee. Now sit there for the entire time and don’t bend that knee. See how your leg and foot feels at the end of an hour or two.
I have always been very stubborn about not giving up what I like to do and concede to physical issues. Now I am prudent about what I choose sometimes, but think that anyone who has physical issues should not give up what you love to do. Find a way. Life is too short to put off those things because you hurt or it is not convenient. But the truth is, as I get older, some things do get more difficult. Even though my energy level is basically very good, I sometimes dread going and doing certain things. And maybe it is more “anticipatory” than actual, but I don’t think so.
I am a big guy and have been shoe horned into various planes, trains and buses over the years, arriving at destinations worse for the wear!! I have often experienced incredible amounts of pain, numb extremities, and exhaustion, based on how far it is necessary to walk through some airports! Walking with a stiff leg requres use of different muscles and expends more energy than normal walking. Walking on uneven ground or on un-mowed grass is exhausting.
One of my favorite activities is driving.. not that it is comfortable most of the time, but it is not stressful and in fact can be quite relaxing. My primary care doc some years ago made the recommendation that I stop and stretch AT LEAST every 2 hours. And I do try and adhere to that recommendation, but not always. Sometimes it is easier to do than others, depending upon time constraints. But, it is advice well taken by anyone!
As I think about making choices for activities that are fun yet relatively safe and without much risk, I find that as I get older I tend to take on more rigorous things physically. I feel like if I don’t do some of the things I love to do now, when will I? The day will come when I will have to choose even more prudently than I do now.
Pain has a funny way of helping us choose our battles at times. Not that I have ever much given in to it. But at times it is totally necessary. I find the times that it is most necessary to enter into this agreement with pain is when it is accompanied by other symptoms. For instance, when I am having neuro symptoms in my legs along with increasing back pain, I know that I have to tread lightly for a bit. It usually passes by mid-morning, but not always. On those days, it is crucial that I spend some time just sitting. Standing is always awful unless I can bend somewhat at the waist. Sitting relieves some of the pressure on the nerve roots, at least for me it does. Other times, sitting is the worst thing I can do. Moderation is usually the key. Not too long standing, not too long sitting, and of course, not too long lying in bed.
Right now, I am having a fair amount of nerve pain and numbness. It is disconcerting because last summer, I was about to have surgery to decompress some of the effected nerve roots. Then had some improvement, and now have backslid a bit But I am determined not to give in to the possibility of an easy fix. Back surgery is iffy at best. Less than 50% of cases have little or no improvement, and in some cases, it is actually worse!
So travel is problematic at best. In the case of air travel, less than 3 hours is preferable. Over 3 hours, depending upon the seating, the level of discomfort can be considerable. And I usually choose a window seat for comfort, which further complicates moving about. It is difficult to stand every hour or so when you are on the inside. I truly hate to inconvenience my fellow travelers unless it is absolutely necessary.
For some reason, I am having this awful time putting this to rest. I keep coming back, maybe because it is hard for me to admit that something in my life is getting harder for me as I get older. But those of you who suffer with chronic pain know exactly what I am talking about. And for the most part, there are few things in life that I intend to give up because of any physical infirmity. But the day-to-day grind sometimes gets the best of me. Too little sleep, too much hurting, not enough time to recover after particularly stressful events. Like traveling for 10 days and feeling for the next week like a bus has rolled over you? Ever feel like that?
So I am going to publish this and see what kind of comments come. Am interested to see how many others share a touch of any of this.
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Have you ever wondered about where that little voice comes from? It is your conscience? Is it some higher spiritual being speaking to you? Is it your subconscious mind playing tricks on you?
I have pondered this question many times. Going through many years of chronic narcotic use, I found that at several junctures I began to hear this voice. At first it was easy to ignore. But as time went by, it became louder, more distinct. The message became clearer and clearer. “Stop the insanity, or else”. Well, I didn’t listen. And the harbinger of bad news became my best friend.
Now that I have been drug-free for 17 months, and after much thought and rumination, I finally think I have an answer to the question I posed in the first sentence. In my case, I believe the voice in my head was death. I have read a book that was recommended by my son and his girlfriend called “The Book Thief”. This book is unique in that the narrator throughout is Death, personified. It is set in the late 1930’s in Germany which was a very busy time for Death. And it would only get worse. I would recommend this book not only for it’s rather unique perspective but also for it’s heart and soul.
So, anyhow, why do I feel like the voice speaking to me was Death?? In my experience, Death had a grip on me. I skated at least twice in relation to drugs and couple of more times for other reasons. He doesn’t miss an opportunity, normally. So after several near-misses, he began giving me hints that if I didn’t get my act together, the next time it might be our “final dance”. And still I didn’t listen. I continued with my nonsense until the point where he was screaming in my ear!!
When do you start listening to Death when you are addicted? Is it the first time you O.D or nearly so? Is it the second? Is it the time you wind-up in the E.R. because you have chosen poorly, and quite cold-turkey, psychotic as shit? I guess for me it took really about 4 times. Maybe 5. I never said that I was the sharpest tool in the shed. When I worked for Jerry Coulson in high school, there was a young boy who lived in the neighborhood of the service station. It was apparent that he did not have an easy life. He would walk into the office, dirty, disheveled, looking as though he had not eaten in a month. He talked incessantly. Jerry would get a bit exasperated with him at first as he would be trying to balance the books and this kid would not stop talking. So he would feed him and give him a soft drink in the hope of shutting him up! Well, after a while, Jerry decided that it might be better to put this boy to work. So he would give him odd jobs, (he was maybe 8 or 9 years old) and then payed him at the end of each day. Often, the kid would do something fairly simple-minded and Jerry, who could never pass the chance to make a joke, would call him “hammer-head”. The first time he did it, the boy looked at him and asked, “what’s a hammer-head”? Jerry said, well son, you are not quite sharp enough to be a hatchet-head. Then he would laugh! I figured out one day that death was this boys companion. After nearly 4 years working for Jerry, through rain, snow, sleet, hail, no matter how long this kid was a the station, no one ever came looking for him. About a year after I graduated high school, I stopped back at Jerry’s to buy gas and he was working there, not as a kid any more, but as a young man. Jerry, instead of just doling out charity to this unfortunate lad, taught him to work, and taught him a skill.
Was talking today to Jonathan, who related a message from one of our old neighbors in Lee’s Summit, MO. In 1998 when we left there, a young boy who lived across the street from us, was diagnosed with some form of Leukemia, the type escapes me now. He had been in remission for several years but this past Christmas, contracted a staph infection and quickly died from sepsis. He was about Jonathan’s age. Death had been his companion as well I guess. He just didn’t know it.
Anyhow, back to my story. So after 4 or 5 brushes with Death, I finally began to see that I was cheating him and that in the end, the only one to win is Death. You can’t beat the odds. No matter what, he wins, eventually. I have read how others have made a similar journey with pain and with drugs. How they fought and fight addiction. I wonder though, if they realize how close they are to meeting Death? I would love to have some comments on this subject from you, the readers.
I have talked about how at one time several years ago, I was “the sickest person in the hospital” according to my surgeon. Lying there with this horrible infected abdominal wound, a raging fever, my gut twisted, I had a lot of free time to think. I was so weak that making laps of the nursing unit I was on was all I could hope to do. And some days it took every ounce of strength I had to rise from the bed and walk the 60 steps it took to make a “lap”. I know how many steps it took because I counted them Then I would add a step or two each time in a attempt to regain my strength. But it wasn’t happening. Nothing in, nothing out. Just like your car!
One day I actually had a talk with death. I was sick and tired of being sick and tired. So I talked back to the voice in my head. I was hurting, pissed-off and in the foulest of moods. And you know, he listened. And I don’t think that at the time I was aware of with whom I was speaking, but I had this abiding sense of peace come over me, like something had been accomplished in this 5 minute conversation. And what I had said was simply this: ” I am done. Do with me what you will. Take your best shot. But you had better be prepared, because you won’t take me without a fight. I have too much left I wish to do in this life.” And I guess that has been my mantra of sorts ever since that day. That the day may come, will come, when it is time to reconcile many things. But being off of narcotics has given me a renewed sense of purpose. I see things more clearly, feel things more acutely, and love, truly, like there is no tomorrow. And I am no sage, no font of wisdom. But I have watched Death waltz into the E.R., the O.R. the back of the ambulance in which I was riding, dozens of patient rooms, a few roadside encounters, a restaurant, and the room where my mother died. He is smug. He is cold and calculating. He takes those we care the most for with no regard for feelings. I guess the one consolation is that we shall all shake his hand.
One day, I saw Death come into the ICU. He was dressed as family. The hospital where I was working was fairly small so everyone basically knew everyone, particularly on the shift you most commonly worked. On the Med-Surg floor there was an older nurse who had been on the same unit for nearly 30 years. She had a reputation for being a bit gruff, even mean at times. But she was always an advocate for her patients. The only times I ever saw her get really angry where when things were not happening in favor of her patients.One night during her shift, she began having chest pain. She had been a lifelong smoker and was well known to me for her exacerbations of COPD. She worked too much and slept too little. Ultimately, she her lungs had de-compensated, and her heart couldn’t take the strain. She had a cardiac event and wound-up in the ICU on a ventilator, critical but stable. She was awake and alert. The morning after this happened, her daughters blew into the ICU filled with anger and harsh words for anyone in earshot. They screeched at the doc for having their mother on a ventilator, she would have never wanted that, didn’t want any kind of heroic measures done to save her life. Well, no one bothered to ask this woman. The daughters demanded that she be removed from the vent so that ” nature could take it’s course”, it was what she wanted they insisted. After several hours of posturing and discussion, I got a call from the ICU. When I arrived, I was told that I was to disconnect her from the ventilator. Now this was nothing new to me. I had done it many times, but never with a patient who was awake and alert. I grabbed the nurse for this patient and the doc and walked them into the break room across the hall. I asked, “WTF??” This woman had a chance, a real chance for recovery. But the daughters had insisted that their mother wanted none of this. So I walked back to the ICU and did a quick assessment of her. BP was good, stable, breath sounds were fair, no major arrhythmias. I told both the nurse and the doc that they would have to find someone else to unhook this woman. That I was fundamentally opposed to doing this. So the nurse disconnected her and switched off the vent. Honest to God I stood there and watched this woman gasp for air and beg for help. It was the most horrific scene I had ever experienced. She was mouthing the words, “Please help me” I finally left the room, no longer able to watch this. That day, Death strode into the ICU dressed as her daughters. And she died. And what had happened in my mind was criminal at best. Indeed!
Filed under: Health
I was thinking the other day, dear readers, what it take in life to find serenity. To find a place where everything in your life starts to come together and the emotional constraints of youth begin to fall away. Where do you find a place where you can meet this kind of mind, body, spirit, enlightenment? I have read a fair amount about the Eastern religions, have read most of Deepak Chopra’s books, even attended one of his weekend seminars in rural NY at the Omega Institute. Not that any of this makes me any better to comment on this subject than the person next to me. But after spending many years wrestling with chronic narcotic use and chronic pain, I do think that anything I can share might be at least interesting.
One of the things that happens to people who live with chronic pain/and or chronic narcotic use is that you tend to be somewhat stunted emotionally. Either the pain forces you to move within yourself, mostly as a coping mechanism, or the drugs blunt your sensorium, physically and emotionally , leaving you unable to truly “feel” and experience the emotions, healthy or not, that someone else might.
I personally spent a number of years walled-off from those around me. I pushed my emotions deep inside as I tried to cope with the increasing pain, and the need to keep it from the surface of my existence. I think that it is impossible to embrace the increased physical stimuli on a daily basis and not lose part of yourself in the coping. As humans we tend to move things around, particularly emotionally, in our attempt to cope with adversity, and in the process, something gets lost. It certainly did for me.
And now that I find that I can “feel” again, it is the oddest of sensations. It is as though my body is not my own. That the part of me I need to rely on to keep things real is running on “hyper-drive”. It is like the governor on my emotional flow is stuck wide open. Everything flows so quickly and with such a roar, that it is easy to miss something along the way. But by the same token, being drug free has it’s disadvantages. Since the drugs are no longer present, but the pain is, then something has to give. There has to be a new set of skills to deal with the pain. Not that they probably were not present all along, but weren’t engaged in a way that was particularly meaningful.
So what does all of this really mean?? Well, for me, it means that many old feelings come creeping back in . Particularly when it comes do dealing with the GI issues. There is so much fear, so many negative feelings and emotions tied to the exacerbations of my GI symptoms, that I find myself hiding out more and more. This has been a particularly long exacerbation, and it is becoming more and more frustrating. I find that I wake every day dreading food. Dreading the realization that it might not be better today. Then hoping that it is. And in the back of my mind are the trips to the ER in the middle of the night in a blizzard, completely obstructed, vomiting , in incredible pain. The surgery, the recovery, the complications, and last but not least, the alteration in body image that each new surgery brings. My wife asked me why I don’t take my shirt off when we are at the beach or on a cruise. It is because I don’t want to scare the little one’s around. I don’t want people to stare and question what has happened to me. This horrendous scar down my midsection sometimes alternately feels like a badge of courage and a brand. And along with everything else about my body that I dislike, makes me feel like I am sometimes untouchable. I guess we should all be proud of who we are, of how we look. And as a society we certainly put way too much emphasis on physical appearance. But I also know that physical appearance goes a long way in our whole “first impression” of people. It shouldn’t but it does. So if you meet someone new, you are forced to work harder than a person who is physically impressive, no matter how terrific you are on the inside. The preconceived notions of people stand strong against the tide.
So if you find yourself in a position similar to mine, remember one thing. It is truly our hearts that make us who we are. Our bodies are simply the vessel by which our heart and soul is conveyed. Remember that the next time you meet someone who might otherwise be “untouchable”. Put yourself in their shoes and try to imagine how you would feel if you were that person. And remember: Kindness goes a very long way. Reach out to someone in need. It serves not only to make them feel better, but in the end, is so good for you as well.
So what dose this have to do with seeking and finding serenity?? I believe serenity comes out of love. Alone, the sense of being in a better place is tempered somewhat if we find ourselves alone. Being able to share our good fortune, our life filled with peace and happiness, is so important to finding serenity. Being able to share ourselves and allow for an exchange of emotional energy is so fundamentally important. Being alive is so much more than just breathing. Being alive is so much more than taking up space on this planet. John Lennon wrote a lot about love, as a means to finding a better place in ourselves. “Love is all you need” Goes a long way to filing the void, doesn’t it?
Find it, grasp it, hold on for dear life!
Filed under: Health
Weird title, huh?? Well sometimes I feel like that is what I am doing on a daily basis. Long division in my head, trying to keep what’s in there from coalescing into something unusable. A mind is a terrible thing to waste, right? Being subjected to the rigors of chronic pain is something that most don’t understand, unless they have been there themselves. A tooth ache, a back ache, a broken toe, all examples of pain. But when the insult is fixed the pain goes away. Imagine have this sensation today and every day for the rest of your life! Then add that to the rest of the stuff and you get a picture of what life is like.
But one point I wish to make very strongly. I would so much rather “feel” on a day to day basis, even if it is pain or discomfort than the alternative. I spent too many years denying any feelings to keep the bad ones at bay. Not a pretty place to be. For me or for those around me. The feelings of loneliness and isolation in me had to be compounded in those around me. When someone won’t let you in, the frustration can be overwhelming, very painful. Sharing is always preferable to not sharing.
Unfortunately, it took me 30 years to realize this point. And managing your life in chronic pain is a delicate balancing act. It can be a simple task one day when you are feeling well and the pain is minimal, and others, it is all you can do to get out of bed! The trick is to minimize the days when you really feel badly.
I have learned to use a variety of techniques to balance things out. Biofeedback, relaxation (which I use every day, some more successfully than others) rest (which can not be over emphasized) and exercise, which I do better with some days than others. Rest is one of those things, for the many of you who have been through a multidisciplinary pain management program will tell you, that is imperative to success in coping with pain. When you are exhausted, not sleeping for one reason or the other, and pushing yourself to do more than you know you should, it will catch up with you. I am the king of driving myself to finish what I start, and keep moving. I know there are days when I should stop and rest in the middle of the day but don’t because I am trying to get something off of my plate. It is dumb, it is foolish, but I do and you so do the rest of you. And yes, you know who you are!!
Pain control without narcotics was something I thought would be nearly impossible to deal with. I was both right and wrong. There are days, I have to admit, that it would be nice to be able to kill the pain, regardless!! But it is those same days that remind me of all of the wasted days when I did just that and was still in pain. Now that I am left to my own devices, I manage to get through with a dose of Advil or whatever, and nothing stronger. And I am ultimately thankful for that!! And without the support of my wife and son’s I would never have been able to make it to this point.
And I am not sure about others out there, but for me, when I thought I was managing my medication use, feeling like it was the only thing in my life that I had control over, I was deluding myself. I was not managing anything but to escalate the doses, shorten the time between them, and push myself toward an early grave! And even after I got to the point where I wanted to stop, the spectre of “withdrawal” was always lurking not far away. And as I have said before, it is a powerful deterrent to quitting. Even in the best of rehab programs, withdrawal is going to happen. It will be managed to a point, but it will come and take you places you don’t wish to go.
So what does the future hold?? My crystal ball is murky tonight. What I do know is that more than likely, I will have more surgery, knee, hip, back, etc. And with that comes the whole re-introduction of narcotics into my system. But now, I have been down the dark path enough times to know that I can’t do it again. I won’t do it again. I feel stronger, wiser, than I have ever felt in my life. I see things through new eyes! And I hope and trust that it will be enough.
